SCHÖNER TOD AND DEATH WITH DIGNITY

A friend of mine in another state told us his mother died about a month ago. I met his mother once, and found her a lovely, friendly person. But we all get old, and her old age was complicated by strokes and gradual deterioration. For those who say age is just a number, it can be a crappy number. She was a widow, too. A great majority women over 85 are unmarried; half of men. Just a number? No, real numbers. Sad facts.

When she went to hospice, after another stroke, she developed disordered breathing, hyperventilation, which could have been due to the stroke or early pneumonia. To me, it really didn’t matter, because once a person is in hospice, they are to be kept comfortable until they die. That may require morphine. Yes, morphine, addicting morphine that slows down breathing, suppresses coughing, and might actually hasten death.

Can’t have that, say some.

Admittedly, the feds have a schizophrenic approach to pain management, because the medical profession failed to manage pain adequately at both ends of the spectrum. We gave too much pain medicine to the wrong people for whom it was not helpful and addicting, and we under-treated others, who needed more analgesia than they received. It is entirely possible one day to be in a hospital, where smileys for amount of pain are measured, and 1 smiley is good. A day later, one may be out of the hospital and pain medication strictly controlled so he doesn’t become a medication abuser. I may exaggerate, but not much.

Pain or agitation control, when a person is dying, should be easy. You give whatever it takes to control it. This lady, mother, grandmother, wife, was dying. Her life was ending. She, like my late mother-in-law, lived far too long. Yes, that happens to many people. Hey, it’s just a number, right? Life is sooooo precious, until when one is ready to die and won’t. Sort of like Dustin Hoffman in “Little Big Man.” But this is real.

Or won’t be allowed to, naturally. We say that not treating a pneumonia is “playing God,” but we resuscitate people who don’t want to be resuscitated. I’m not a believer, but if I were, I would say that is much closer to “playing God.” The Bible and the Qu’ran don’t say 300 joules to shock the heart, when a person with dementia suddenly has a heart arrhythmia. My friend’s mother would have liked to have lived a long, healthy life, but the second adjective was not to be. She was ready to die. She had nothing left to live for.

I hope I am that brave, should I reach that situation.

I hope I don’t end up in a hospice where morphine is “metered out,” in small amounts, because someone fears they might be accused of killing somebody, by making them comfortable in their final hours, even if the final hours were shortened. If that is wrong, then the world is wrong. Fear of the patient’s dying as a result is NOT a contraindication to give morphine. Addicted? The person is going to die, not seek drugs. They are going to cease to exist. It is the way of the world. The verb is “to die”; the noun is “death.” Use them, not euphemisms.

A sick person in hospice should never, and I repeat never, be denied medication to keep them comfortable. If hospice workers do not agree, they should work elsewhere. Sadly, this is too often the case in America today. Ask Barbara Mancini, who was prosecuted for having handed her father morphine, when it wasn’t even clear he was suicidal. Because that particular hospice was a place where “death is an option in America” occurred, her father suffered hospitalization for four more days before he died. He didn’t even need to go to the hospital. Naloxone reverses morphine. Indeed, I used it in the Navy in the Gulf of Thailand once, and it was the only clear life I ever saved. Ms. Mancini was arrested in the hospice and put through hell for a year and $100,000 by a prosecutor who may be in Congress, now. The judge who threw the case out of court wrote a scathing 42 page report, if I remember correctly.

Fortunately, the medical profession is beginning to come around more and more to the idea that sometimes we need to allow patients to die. We need to do whatever necessary to keep people comfortable, even if it means shortening their life. And in five states, the patient who fulfills certain conditions can choose to shorten his or her final hours, because the end result is the same.

Let’s be clear about semantics, here. This is not assisted suicide, Dr. Gawande. Your book was well-written, except for the short shrift and the wrong term you gave to Death With Dignity. This is an individual who is dying, soon, and does not wish to prolong the process. This is a individual who is aware what is happening and chooses not to continue. It is not assisted suicide. The disease is killing the person; they want to live. But they want to shorten the agony of their final hours.

We can argue as to whether palliative care or hospice can deal with these conditions rather than a Death With Dignity Act. Maybe they can, but in far too many places in this country, they are not. That is a fact. It may be religion, misguided, or financial. I personally don’t think palliative care can deal with the conscious person with pancreatic cancer, sees the end in sight, and doesn’t want to live it out. I hope I don’t have to find out personally. In my home state of Oregon and four other states, I don’t have to.

Any hospice that fails to give an elderly woman morphine, because her family members are upset by her breathing, should be closed down. The lady is beyond knowing, but her family is left with a bitterness that will never heal. I am both angry and astonished that addiction or “mustn’t give too much morphine to a patient” still exists in the 21st century, when somebody is dying.

It’s nice that Dr. Gawande and others are finally aware at the state of dying in America today. Welcome aboard the train. I boarded it 40 years ago in on the third floor of Presbyterian Hospital in Denver. I’ve been riding it ever since. I’ve known when to quit, and I know how to do it. I count things, and I think it’s high time we counted the number of people who die at home, the per cent who have living wills, the number whose living wills are violated, the per cent who used hospice, and how long before death they used it, and the number of “Schöner Tod” (beautiful death, a German term). Everybody dies; on the death certificate there should to be a place for “Living will used,” “hospice,” “hospice at the appropriate time,” and since we are so in love with smiley faces for pain scales, whether the pain scale the last week of life was 1. Dichotomous question. Easy.

One Response to “SCHÖNER TOD AND DEATH WITH DIGNITY”

What you are saying is true, but I have found this to be somewhat regional. As a traveling Hospice RN in Michigan, New Mexico and Colorado, the range of provider expertise is from 0 to 10. Where the delivery of adequate symptom management was practiced, it was provider specific. That is to say it was primarily dependent on the Medical Director. As is so often the case, the licensed nursing staff had to “educate” the providers on a patient-to-patient and daily basis. There are also considerable service restraints in the For-Profit arena making the care provided by the bedside staff less than they want to provide. Denise Helmkay helmkay@aol.com